Waitin' on a Woman (And Her Stomach)

I've put off writing this blog post. At this point, I'm not really sure what to write. We seem to be in a type of NICU purgatory - nothing bad has happened this past week, but there isn't much progress forward. June is just a standstill. The disappointment of the hole in June's stomach not making any progress (and at times opening wider throughout the week) has not been easy to handle. I feel like it was almost easier to stay strong during June's bad days than during these days of nothing. That seems awful to say because of course we don't wish ill health on our beautiful daughter - it's hard to describe in a way that makes sense.

June's disposition throughout this whole ordeal is inspiring. When I start to get down or lose patience, I remember that sweet face that looks up at me with all the love and trust in the world despite all the pain she has felt since the beginning of her life. I know that we have so many years ahead of us that will make this time seem like a drop in an overflowing bucket, but all the idioms in the world doesn't make this time any easier. Tonight kicks off a new week and a new round of optimism.

The one positive this week is that June continues to gain weight. She is now 10 pounds and above the tenth percentile on the growth chart. They upped her feedings to 29 milliliters of milk and formula an hour from 28 milliliters so she can continue to stay above the tenth percentile. Earlier in the week, we were still trying to feed June by mouth. For one feeding, I got to nurse June, and she did surprisingly well for not having ever nursed. Unfortunately, the drainage in June's wound vac drastically increased mid-week and all mouth feeds were stopped.

Physical therapy was started again for June. A couple times last week she did stretches and worked on holding her head up. She wasn't sure about the stretching, but she loved sitting up and being talked to as she worked on holding her head up herself.

The hole in June's stomach is the point of frustration for everyone involved. For weeks now it has been very small but still visible - a pinprick. Early this week it actually stopped draining, and although it was still visible, the surgeons thought that was a sign that it was healing. Unfortunately, the next day there was over 90 milliliters of drainage and the hole was slightly bigger. The wound vac has leaked almost every day, as they continue to try new approaches to get the hole to close without irritating her skin too much. On Thursday there wasn't any drainage again, so they decided to try taking the wound vac off, but within two hours, it was leaking through the bandages again. As I mentioned earlier, feedings by mouth have been stopped until the hole closes. We have done a couple five milliliter feeds by syringe when the wound vac was off so the surgeons can see how much comes out when she eats. When the milk goes into her belly, nothing comes out through the hole - only some air bubbles. The thought was the wound vac was sucking too hard on the wound, but within hours, drainage would be coming out again.

On Thursday they did a dye study to see if there was more blockage in the small intestines. It might be one reason why the hole wasn't closing because everything she was swallowing was being stopped from going into her intestines and coming back up through the hole. The good news is that there didn't appear to be any blockage, and when they did the dye study, not a lot came out of the hole in her stomach. Her TEF repair also looked good; the esophagus is narrow where the repair was done, so she might still need a dilation procedure in the future.

June continues to love all the attention she gets from all the staff (unless they are messing with her belly). She loves to sit up and be talked to, and sometimes she graces us with her adorable smiles (never for the camera though).